Self-Advocacy

November 03, 2011

Just as I’m flying to California State University Northridge to present at their Deaf College Student Leadership Conference, I was reading a copy of Newsweek. There was a story on the infectious appeal of the #Occupy Wall Street movement. One particular quote stood out to me:

“In 2008 vast new numbers of Americans transformed the political process through social media and small-donor fundraising, electing a rank outsider, Obama, who challenged the natural heirs to the old system, the Clintons. The next year Iranians, empowered by the same technologies, called their own leaders’ electoral bluff and nearly changed the world. This year the very same empowerment gave us the Arab Spring.” - Andrew Sullivan, October 31 2011

The narrative goes on to link the meteoric trajectory of social media’s increasing presence in our daily lives and its impact upon global politics and - yes - corporate responsibilities. The “99%,” as they unveiled themselves on Wall Street more than six weeks ago, spoke out against growing income inequality and argued that financial institutions played a large role in it. The #Occupy Wall Street movement quickly expanded exponentially, garnering solid support through public opinion, even seeing #Occupy camps being set up in other cities. Soon, the #Occupy movement had hit the international level. I was starting to become accustomed to seeing the pictures of frustrated people getting their message out. I was inspired when these same pictures from places such as India, Italy, Chile, Russia, the United Kingdom, Algeria, and Spain appeared.

Some people criticized #Occupy as disorganized and lacking focus. But other pundits took to the pages of newspapers, magazines, and blogs to defend the #Occupy movement, calling it “not a protest but a true movement.” Regardless of how one defines #Occupy it’s clear to me that it could not have been possible without the power of social media.

We now see where the narrative has led us to, but the untold story is how the narrative didn’t begin at Obama’s 2008 campaign. The revolution of the social media hit the people with disabilities community, with their unique needs and perspectives, and changed their lives before the 2008 campaign. I’m telling this story not to have the disability community take credit as the originators but to give evidence of and solidify our unique status as “the canaries in the mine.”

What, canaries? How does that relate to #Occupy Wall Street and the world of Facebook/ Twitter/ YouTube?

In the olden days, when there was no technology to detect dangerous and deadly carbon monoxide in the mine, people used to bring canaries - bright, yellow, and singing - into the dark pits of the mines. Their purpose was to keep the miners alive. Because the canary was such a small, fragile bird, the carbon monoxide severely damaged the canary’s lungs long before it could have detectable effect on the miners. As soon as the canary stopped singing and dropped dead, the miners knew it was time to get out of the mine. Through this strategy, hundreds of human lives were saved.

The disability community - especially the deaf community, where I hail from - is likewise smaller, more fragile, and the “first to be impacted” by nearly anything that happens in the real world.

At generally the same time as the hearing world, the deaf community discovered blogging and vlogging (video-blogging). In May 2006, as the members of Gallaudet University rose up in a protest against the Board of Trustees’ decision to select a controversial candidate as the next President, the impact revebrated through the circles of deaf social media with a sonic boom. The administration presented their side of the story, which the protesters disputed and learned through the hard way that the mainstream media wasn’t always so fair in their coverage. The frustration of having one same article published in hundreds of newspapers through the Associated Press intensified the protesters’ dissent and added more to their argument that the perception and explantation of the protest was distorted and dishonest by the administration. We were merely students, staff, faculty, and alumni up against media professionals!! Such was the frustration we faced, but I’ll never forget this one game-changing line from the University’s offical public-relations spokesperson, defending the administration’s public relations tactic of distortion and giving misleading explanation of the protest’s real issues:

“Actually, the protesters have been very effective in getting their messages out through blogs and vlogs.”

That was true. Very true. Game-changing true. Ever since before the protest had happened, the deaf community was watching the protest closely and with deep interest through the internet. There was a blog set up that tracked the candidates for the Gallaudet University Presidential Search. Vlogs were made, hot discussions were had, and comments numbered well into the thousands. The anticipation was ripe when the announcement was made in May 2006 and when the information was disseminated, the blogosphere exploded in discussion and activism. There were a few blogs that ultimately became a kind of news channel for the deaf community, rapidly updating nearly daily with new information and developments. This gave us opportunity to present our side and our story, absolutely unfiltered and unmanipulated by the mainstream media.

At the time, we had only one media strategy - tell the truth. Tell the truth. Try to get the mainstream media to explain the truth. We didn’t have any other strategy than that but looking back, we utilized many tools that were enormously effective through the use of social media. We were able to galvanize and organize the community in a mass, to control and continue pushing our message out, and stick a powerful thumb in the side of the big guys.

The underdogs won in October 2006, when the Gallaudet Board of Trustees announced that the president-designate’s appointment would be rescinded. We cheered our victory! And in the aftermath, we were proud that our internet outreach had been so powerful to expand the tent city on Gallaudet University’s front lawn to a series of tent cities across the nation and internationally.

In 2007, when Dr. Robert Davila became the first person of color to serve as Gallaudet University’s president, the moment had great signifiance to many communities. As he took the podium to give his acceptance speech to the community, the first thing he said was “I’m home.” The deaf community cheered once again! That same year, then-Senator Barack Obama surveyed the landscape and decided that the moment was ripe for him to run for the President of the United States.

What the deaf community went through in these turburlent times of 2006-2007 ultimately gave us a small prediction of what would happen in the larger American and even international society. First, the impact of social media and the use of internet campaigns completely changed the way we organized ourselves for social and political causes. Secondly, people of color are now becoming more and more in our society. We are no longer survivors of outdated perceptions, inspiring in their climb towards the top. They are now university presidents, Commander in Chief, even overthrowing regimes.

Wherever you live, whatever your goals, whichever candidate you support, you are living in a world where social media – as mastered by the Deaf community—is a source of power that can’t be ignored. We tested the atmosphere and carved out a space for great work. What we have done will have a profound impact on movements that follow.

October 17, 2011

In the past several years, I’ve found myself in quite a few “at-the-right time-and-place” situations. I’ll tell you about two instances that are related:

I started my company, Keen Guides out of a random rainy day in a museum, when I discovered that audio tours were not as accessible as one would expect them to be given the technological advances of 2005. You can hear and watch the story by watching this video.

While I've been on Twitter since its infancy in 2006, I never caught on until Fall 2010, when I decided to dig in and give it a serious try for a solid week to see if I could better reach the museum and accessibility community. Well, I picked the right week because half-way into this week's experiment, I came across a link about the Hearne Award from the Twitter accounts I had recently found and started following. I was excited to learn about this, and slightly panicked seeing that I had three days left until the deadline. But I managed to get my two letters of recommendation completed (and pulled an all-nighter) to get what would be the winning application submitted in time. (Note: I'm certainly not advising you to wait until the very, very last minute to start the application. I got super lucky, especially since I had two awesome references who were able to help in such short time.)

Those two "at-the-right-time-at-the-right-moment" occurrences make me extremely grateful for the Hearne Award. This opportunity yielded me some great experiences, and I'll highlight a few of them in the bullets below:

Credibility - I was perceived by the business and disability community as a person with a valid, true focus, and a real cause that positively impacted not only people with disabilities but also everyone else.

Connections - The Hearne Award provided me with a vast network of leaders and advocates in both the disability field and business community. I've been able to meet with individuals in Fortune 500 companies, and with some of the most well-renown advocates in the field. How awesome is that?

Platform - Through the Gala and the video production, I was able to more effectively communicate my vision and goal for better accessibility through technology. I was able to do it live, in front of 700 people, and now I have the footage at the ready to share with other people so they can continue to learn about my mission.

Those are just a few of the areas outlining how the Hearne Award has been such a positive experience. If you’re considering it, I would first ask yourself these questions:

Do I need an extra boost in my credibility?

Am I in need of a stronger network of accessibility and business leaders?

Are my “marketing” materials as robust and targeted as I’d like them to be?

If you said “Yes” to any or all of the above, then you should apply for the Hearne Award of you meet the qualifications! Good luck!

August 25, 2011

By now many of you have received the sad news that Fred Fay passed away this past weekend. Our movement has lost a fighter, an innovator, and a problem solver. We have also lost a friend.

Through the assistive technology he developed or the legislation he championed, Fred changed our lives and our world in tangible ways. When Fred was invited to the White House in 1964, his wheelchair had to be bumped up the steps because the White House was not accessible. It is accessible today, and that means more than just being able to attend a signing ceremony or go on a tour. It means having the opportunity to make our case to the highest levels of government. We owe this opportunity in no small part to Fred, who fought with equal passion for access to education and employment and who inspired so many people to fight alongside him. It would be impossible to give a complete recitation of Fred’s accomplishments in this letter. We are posting links to some of the articles that have been published in the past few days. We’re also pleased to share letters from Yoshiko Dart and Becky Ogle.

We believe that the best tribute we could pay to Fred is to use Justice for All —which Fred co-founded and loved—as a forum to share our thoughts about Fred’s life and about how to continue our civil rights work together. Please submit your comments below to join in the conversation about taking this work forward with the same passion that Fred brought to it.

Please accept our deepest condolences for the recent passing of Fred. Our thoughts and prayers are with all of you for your peace, comfort and strength to live through this difficult time. You all did a magnificent job assisting him to live a life of quality to his fullest. Hats off to you!

Justin and I had the privilege of working closely with Fred for many years on the ADA, Justice For All, political campaigns of/for/by the disability constituency and more.

When Fred received the 1997 Henry Betts Award at the Library of Congress via Satellite, Justin stated, Congratulations to Fred Fay, one of the greatest human beings I have ever known. He has been a pioneer of the international movement to liberate the hundreds of millions of people with disabilities from subhuman status. He has been an outstanding leader in research, philosophy, advocacy and politics.

His every act has communicated the courage to stand for principle, and the profound love for every person that has characterized the truly great moral leaders of history.

He has made monumental contributions to the quality of my life, and to the quality of the lives of millions in present and future generations.

Fred, Yoshiko and I are so proud to be associated with you. We love you. Lead On!

The monuments to Fred Fay will live and grow as increased quality of every human life as long as humans exist.

Fred, we love you. We cannot replace you, but we will multiply our passion and our actions to achieve the golden Dream that we share – the individualized empowerment of all human beings to live their full personal potential.

Beloved family members and friends of Fred, we love you.

FAY FAMILY POWER! POWER OF FRED’S LOVING AND FIGHTING SPIRIT! POWER OF DISABILITY PRIDE AND DIGNITY! POWER OF GLOBAL SOLIDARITY!

Dr. Fred Fay was many things to many people. I could write about how proud he was to be a father of a bright and talented son and how proud he was of his wife Trish and her accomplishments as a business owner and wife, but my writing would not do justice to either so I will stick to what I knew best about Fred; his talent, commitment to disability rights and friendship to many.

Fred Fay, like those who left before him; Ed Roberts, Justin Dart, Jr., Mark Smith to name just a few, was a pioneer in every sense of the word. Fred managed to lead one of the most impressive, productive and meaningful lives all the while being flat out on his back 24-7. Some people who are upright won’t come close to accomplishing all Fred was able to accomplish flat out on his back. Granted Fred was fortunate to have Trish and others in his life who supported his goals and desires, but they will be just as quick to dismiss their own contributions and give full credit to Fred.

Fred Fay embodied all that is good and true in life. Fred was instrumental in mobilizing the grassroots during the ADA, political actions and of course his infamous role in Justice for All.Fred and I had a limited relationship prior to the creation of JFA, but this changed dramatically once JFA was up and running. Fred was the Moderator of JFA, which was no small undertaking, especially given the newness of the technology and the end users (me). Fred had spent many years building his own list of email addresses and it continued to grow it as JFA gained popularity. Few individuals at this point in time had the technological grasp Fred possessed and we all benefited greatly for his knowledge, because without his participation nothing got posted.

Many days Fred and I spoke as many as a dozen or more times. Usually our discussion began with my terrorizing Fred and threatening to roll up to MA to beat him senseless for not posting my alerts. Fred’s responses to my rants were always the same; he laughed. This incited me more, which only caused Fred to laugh more. I finally learned that Fred would always come through, but on his own time and not mine or others. Thankfully Fred’s timing never impeded people receiving alerts in a timely manner.

Little did I understand how Fred worked his magic during all the years of JFA, but this changed when Fred and I met in October, 1996 during the re-election campaign of Clinton-Gore. An opportunity presented itself for my being in the general vicinity of Boston for the campaign. I took advantage of it to meet this mystery man behind the voice I heard multiple times on a daily basis. Knowing a bit about Fred and his background did not prepare me in the least for our actual in person encounter.

Again, it was 1996 and technology was in its’ infancy for many, but not Fred Fay. Fred had his life wired into three different computers that hung from the ceiling enabling him to see them all at once. One computer was set-up for work related activity, another controlled his telephone and allowed him to play scrabble with his son and others. The third mounted computer appeared to give him total control over the surrounding environment allowing full independence.

The real shock for me came when Fred escorted me outside to choose where he wanted to place the Clinton-Gore yard sign I had brought for him. I had no idea the contraption/bed that held him flat on his back would also motor him out into his yard. No big deal or so it seemed to the neighbors driving by and waving as we planted the political sign. Apparently the only one surprised by Fred being outside was yours truly.

I had heard stories about Fred and his legendary relationship with Senators Kennedy and Kerry, and how often Senator Kennedy paid visits to seek out Fred’s advice. Legend held that Senator Kennedy came to Fred’s house on many occasions to discuss disability policy. The Senator took his cue from Fred and the assembled group of activists that Fred rounded up. Fred could have easily kept his visits with Senator Kennedy to just the two of them, but that was not in Fred’s nature. He invited everyone in the area interested in disability policy to attend every meeting he and the Senator conducted at Fred’s home. Pretty impressive, but you’d never know it from talking to Fred, because he never boasted or tooted his own horn the entire time I knew him.

Our community has seen its’ fair share of loss in terms of leaders leaving us way too soon and it is a given that many more will follow. It is my sincere desire that for those that knew nothing of Fred Fay’s contributions to our community you may have learned more here. I cannot do justice to all Fred gave, and hope others’ will take it upon themselves’ to add in their own perspective. The Dr. Fred Fay I got to know was a fine human being, and deserves to be remembered for all he did.

July 22, 2011

In May 1971, near the end of my junior year in high school, I participated in Armed Forces Day activities at the U.S. Naval Academy. I was immediately enchanted by the academy and Annapolis. When I returned to school the following week, I asked my guidance counselor if I could apply to the Naval Academy. He said that he didn’t think so, “because you have to be able to hear to serve our country"...

My outlook changed in the fall of 1972, when I entered Gallaudet College (now university) as a freshman. For the first time, I lived and studied among other deaf and hard-of-hearing students. Thirty-nine years later, I know there is no limit to what a deaf person can do...

July 15, 2011

I wanted to alert you to an important upcoming opportunity to make your voice heard on health care policy.

Among the health reform law’s many important provisions was one that creates a new, independent program for comparative effectiveness research. For the first time, this program gives patients a voice, and a vote, to make sure the research gets done in a way that meets the needs of all patients.

Now we need to make our voices heard. I know first hand how easy it is for the health system to tell us as patients and people with disabilities what is “best” for each one of us. I also know how hard it is to change this system so that we can tell it what is best for each one of us.

That’s why I’m asking for your help. If we can make sure this new research institute gets it right, it could give us a lot of valuable information to guide our health care decisions. But if it isn’t done right, it will just feed a system that tells us what is best for us based on an “average” result.

Each one of us is different, with different medical needs, life circumstances, and health care preferences. The opportunity we have right now is getting the research agenda to reflect these differences rather than obscuring them.

The new institute created to do this research – the Patient-Centered Outcomes Research Institute (PCORI), is holding a Board meeting on July 18-19 in Washington D.C. The Institute is run by a board of governors representing different parts of the health care system, including government, doctors, patients, medical product manufacturers, and insurance companies. As the institute gets up and running, it is vital to make sure the Board understands how important it is to work through open and transparent procedures that give full opportunity for meaningful input and involvement from our community and to define research in ways that are centered on the needs of patients and people with disabilities. You can find out more about this important issue in a one-page background document here.

Since becoming chairman of the Partnership to Improve Patient Care, I have been fighting to ensure patients have a voice in the national research agenda. Please join me at PCORI’s meeting next week and help me make our voices heard. The meeting is at the Westin Georgetown Hotel, located at 2350 M Street, N.W., Washington D.C., on:

Monday, July 18, 1:00pm ET to 5:30pm ET

Tuesday, July 19, 8:00am ET to 11:45am ET

All sessions are open to the public, and those who would like to speak can sign up to speak on-site on the day of the event or email info@pcori.org.

For more information on PCORI’s meeting and what you can do to help keep CER patient centered, call Sarah van Geertruyden at 202-494-5924, or email at saravg@thornrun.com

June 30, 2011

AAPD is partnering with the National Domestic Workers Alliance, Jobs with Justice, and Hand in Hand: The Domestic Employers Association for the Caring Across Generations campaign: an initiative centered on transforming long-term care in the United States for our loved ones who count on the support of caregivers to meet their basic daily needs, the workers who provide the care, and the families who struggle to access and afford care for their loved ones.

On Tuesday, July 12th, the campaign will be hosting a Care Congress, where seniors, people with disabilities, family caregivers, home care workers, domestic workers, children and families of care workers and people who need care will be sharing their care stories.

We need as many people with disabilities to be part of this important dialogue!

What the Care Congress program will include:

Sharing care stories: sharing testimonies and vision for change between seniors, people with disabilities, family caregivers, home care workers, domestic workers, children and families of care workers and people who need care

Giving voice to change: engaging elected officials and key members of the Administration on the need for change

Growing a movement at home: workshops and skill sharing to support participants to build the Caring Across Generations movement in their home communities.

The Caring Across Generations movement is centered on promoting honest, productive discussion among all those invested in improving care. If we are to meaningfully improve the care system for everyone, it is crucial that people with disabilities share their stories.

We need your help in informing individuals with disabilities about a settlement agreement with Wells Fargo and its claims process.

Please feel free to forward this email on to others.

On May 31, 2011, Wells Fargo & Company (Wells Fargo) entered into a settlement agreement with the U.S. Department of Justice. The Agreement requires Wells Fargo to compensate (pay) certain individuals who experienced disability discrimination in violation of Title III of the Americans with Disabilities Act (ADA) when trying to call Wells Fargo or Wachovia, visit one of Wells Fargo or Wachovia's banks or retail stores, or otherwise access Wells Fargo or Wachovia's services before May 31, 2011.

Any person who experienced disability-based discrimination that happened before May 31, 2011 in violation of Title III of the ADA based on something Wells Fargo or Wachovia did or didn't do may be eligible for compensation under this Settlement Agreement. All types of disability discrimination can be claimed; for example, physical inaccessibility at bank branches, refusal by a Wells Fargo bank branch to provide documents in alternate formats, policies that cause barriers to equal access by individuals with disabilities, and refusal to accept relay calls are just a few types of discrimination based on disability.

The deadline to file a claim for compensation is January 29, 2012. If you or someone you know may be eligible, it is important that you or that person file a claim for compensation by January 29, 2012. No claims will be accepted after January 29, 2012.

You can begin the process of filing a claim by sending your name, address, email address, and day and evening telephone numbers by email to WFclaims@usdoj.gov or by leaving a message at 1-866-708-1273 (voice mail) or 1-866-544-5309 (TTY).

This claims process also helps us identify ADA violations to be fixed by Wells Fargo – i.e., physical inaccessibility at retail stores and policies that cause barriers to equal access by individuals with disabilities. Please visit www.ada.gov/wells_fargo/for more information about the settlement or the claims process.

ACT QUICKLY! The time period for filing a claim, established by the settlement agreement, ends on January 29, 2012.

June 24, 2011

Reduced Federal Medicaid Payments in 2012: Many States Already Cutting Back

By David Heymsfeld, AAPD Policy Advisor

In recent weeks supporters of Medicaid have focused on advocating against proposals, such as block grants and global spending caps, which could lead to drastic reductions in future federal funding of Medicaid. The threats of these proposals have obscured the fact that even if none of these proposals are enacted there are provisions in existing law which will result in less spending for Medicaid in 2012 than in 2011. In many states this is likely to lead to reduced Medicaid services including for people with disabilities and their family members.

Background: In the Medicaid program, each state establishes its own program although it must work within federal requirements. The federal government helps fund each state’s program, with the federal share averaging about 57%. Medicaid is the largest expense in state budgets, and constituted about 22% of total state spending in 2010.

Federal Cutbacks Taking Effect on July 1, 2011: As you may recall, there was legislation passed in 2009 to combat the recession, that is, the American Recovery and Reinvestment Act, also referred to as “the stimulus.” This temporarily increased the federal share for Medicaid by about 10%, resulting in the states receiving about $87 billion in increased funding. This increased rate of funding ends on July 1, 2011. However, at the same time, the needs are growing. For instance, as a result of the recession, Medicaid enrollment increased by 8% in 2010, with estimated growths of 5% in 2011 and 4% in 2012.

With federal funding to be reduced by 13% in Fiscal 2012, most states are planning some increases in their own funding, but not enough to close the gap. Overall Medicaid funding is expected to decrease 3%. With the lower funding, most states are planning some changes to limit costs of their programs.

How States Cut their Medicaid Programs: These changes include reduced provider payments in 33 states, making it more difficult for Medicaid patients to find providers willing to treat them. Other measures include limitations on benefits to be carried out in 25 states. Another 13 states will put limitations on prescription drugs. New or higher co-payments will occur in 21 states and there will be expansions of managed care in 19 states. In fact, many states are proposing more than one of these changes. For instance, Table 29 (page 57) lists which states have cut or plan to restrict community-based care (CA, MN, NY, WA).

Note that the so-called Maintenance of Effort (MOE) provisions included in the health care reform Act prevent the states from making other changes such as increasing income eligibility levels or otherwise making it more difficult for individuals to apply.

This will give you some sense of what your state is looking at in regard to Medicaid. For instance, Table 28 shows some specific strategies states are using. Note also that the states are considering ways to increase revenues (Table 30).

Contact your governor’s office or state legislator to learn about specific proposals to cut back Medicaid in your state.

Protest early and often any cuts that are unfair to people with disabilities or revenue enhancements that unfairly burden people with disabilities and their families.

WASHINGTON – The Department of Justice released a new technical assistance document describing public entities’ obligations and individuals’ rights under the integration mandate of title II of the Americans with Disabilities Act (ADA) and the 1999 landmark Supreme Court decision, Olmstead v. L.C. The Olmstead decision held that the ADA requires public entities to provide community-based services to persons with disabilities when such services are appropriate; the affected persons do not oppose community-based treatment; and community-based services can be reasonably accommodated. The document also provides questions and answers on a variety of ADA enforcement issues related to Olmstead.

Additionally, in commemorating the 12th anniversary of the Olmstead decision yesterday, the department launched a new section of its ADA website, www.ada.gov/olmstead, providing information and resources about the decision and its enforcement. In addition to the newly created technical assistance document, users can visit the site to find briefs filed by the Department, as well as other materials relevant to this important area of law.

The ADA website provides easy access to an extensive collection of ADA technical assistance materials and settlement agreements, as well as information about enforcement, mediation, technical assistance and certification activities and links to other sites with ADA information. The addition of the new Olmstead section of the site will provide critical information to individuals with disabilities, advocates and state and local officials responsible for complying with the ADA’s integration mandate...

Frankie Mastrangelo is the moderator for both the Justice For All (JFA) national email listerv as well as for the JFActivist blog. She is also an organizer for the American Association of People with Disabilities in Washington, D.C.